Patient Data: Opting In or Out?


Words by Michaila Byrne


At one point in time, our world’s most valuable commodity was oil. Fast forward to the digital age and that accolade is held by data. Free-flowing rivers of it double up as life sources that all industries, including the pharmaceutical industry, have become dependent on. However, as consumers learn the true value of their own information, the broken dam of data is patched up with privacy laws. Consumer–provider dynamics are being forcibly dismantled and renegotiated, compelling pharma to collect data in a way that employs patients as genuine collaborators.

In the aftermath of the Cambridge Analytica scandal, people were left feeling suspicious of data collectors. The right to privacy and to ‘opt out’ does render pharma’s job a little more complicated but can also act as a catalyst for connection.

“The challenge with data is that nobody trusts anything because every time you open up the news, you read about data breaches, you read about Facebook analysing people’s data in inappropriate ways. So, to me, the keyword comes back to trust. You need to build that trust,” says Jamie Blackport, CEO and Founder, Mirador Analytics.

With the introduction of GDPR (General Data Protection Regulation), EDPS (European Data Protection Supervisor), and more recently the CCPA (California Consumer Privacy Act), regulation is catching up. Pharma has a chance to assert that this perceived trade-off is, in fact, a mutually beneficial transaction.

Chiara Rustici, Independent EU Data Regulation and Privacy Analyst, explains: “Data is vital to medical research and privacy laws are never a barrier to saving lives. It is, however, always a matter of being proportionate, transparent with the affected individuals as to what you’re trying to do, and never using that data for unrelated purposes.”

The intimate nature of healthcare data complicates matters further. “The GDPR wasn’t passed specifically to address the pharma industry, but in regulating absolutely every use of personal data, including health-related data, the GDPR has a vast impact on the pharma sector. Health data is one of the categories that receive a heightened degree of scrutiny,” says Rustici.

“The more I think about it, the more I think that the interoperability of data, the ability for us to be able to use that data, is the most fundamental thing to the evolution of our whole industry,” states Paul Simms, Chairman, eyeforpharma.

Perhaps the challenge is simply the lack of understanding on the patient’s part as to why it is needed. Blackport states: “If people trust what you’re doing and you’re transparent, they’re more likely to say, ‘go ahead’." Blackport predicts success in conditions with high mortality rates, such as rare diseases.

Pharma should collect consented information since anonymisation defeats its very purpose. One way to safely sustain de-identified data is social media: community building and delivering quality content.


If people trust what you’re doing and you’re transparent, they’re more likely to say, ‘go ahead’

Blackport explains: “When you move to the anonymous spectrum of things, you generally lose the opportunity to make a difference... there is this huge interplay in health trying to say: ‘How do we maintain privacy as much as possible but also still maintain utility?’”

He advises against reticence: “Rather than meeting regulatory requirements, try to exceed them. Build privacy into your mechanisms. Doing what we can now protects the use of data for the development of medicine in the future and may just build trust in pharma.”

Pharma has made good use of vast swathes of patient information, but with the proliferation of privacy laws, this supply will inevitably transform from a torrent into a trickle. If pharma takes proactive strides, transparently communicating the utility of data, a more collaborative partnership with patients can commence, founded on trust and consent.

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Copyright © 2018 European Medical Group LTD. All rights reserved. Copyright © 2018 European Medical Group LTD. All rights reserved. Gold & EMG-Health is for informational purposes and should not be considered medical advice, diagnosis or treatment recommendation.

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